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Friday, May 13, 2011

Understanding Hypersomnia & Its Affects

In the past, I have talked about this subject a great deal but this evening, when trying to come up with a topic, I was not sure what to talk about, and this seemed like a good topic to cover once again because it has affected my life dramatically.

For those of you who have read my blogs, you may recall me talking about Hypersomnia. I was first diagnosed with what is called Healthy Hypersomnia and then later this diagnosis was changed to Idiopathic Hypersomnia. These are two different things according to doctors but really they are very similar.

So what is Hypersomnia?

Hypersomnia is a sleep disorder that causes patients to sleep excessively. It is usually caused by a chemical imbalance either by medications or by chemicals naturally released in the human body. Some patients experience symptoms of Hypersomnia because of other medical problem such as Sleep Apnea.

Sleep Apnea is a sleep disorder in which a person has difficulty breathing, while they are asleep. This can include holding one’s breath or not breathing for brief moments throughout their sleep. There are several reasons behind Sleep Apnea. Some of these reasons include being overweight, asthma, allergies, G.E.R.D, the tongue blocking the airways, etc.

I did have Sleep Apnea and sometimes still have episodes but it has always been “Secondary” to my Hypersomnia.

“Secondary”, means they are not the reason for the Hypersomnia but are still present. Secondary Medical Problems do not cause Primary Medical Problems.

Primary Medical Problems are the main source or root of a patient’s symptoms. Doctors try to treat these first to eliminate or lessen symptoms of a Secondary Medical Problem.

Sometimes doctors also have to treat the Secondary Medical Problem. However, treating the Primary Medical Problem may reduce the amount of medication needed to treat the Secondary Medical Problem as well as possibly eliminating the need for treatment of any Secondary Conditions.

A patient can still have Hypersomnia and Sleep Apnea together without them causing one another. Still, a Secondary Medical Problem such as Sleep Apnea can increase the overall symptoms of the Hypersomnia.

However, Hypersomnia is often genetic and most types of Hypersomnia tend to run in families.

Symptoms of Hypersomnia include feeling extremely tired during the day even when the patient has received ample amounts of sleep, falling asleep at unexpected times due to lack of proper sleep, never feeling refreshed, and finding that you spend more time sleeping then you do awake.

Other symptoms include difficulty remembering things and Sleep Drunkenness.

Patients who suffer from Hypersomnia have difficulty remembering things for several reasons. One reason is that they may not be fully awake at the time that they are supposed to recall something and maybe fuzzy about the exact details.

Sleep Drunkenness is primarily associated with Hypersomnia patients. It is characterized by the patient not being alert and not being fully aware of the things going on around them, for a prolonged period after being aroused. Sleep Drunkenness is also characterized by automatic behaviors, disorientation, exhaustion, and unsteadiness.

In addition, patients can easily go back to sleep during these periods and can often look like they are Sleepwalking. Sleepwalking is Sleep Drunkenness.

Patients who suffer from Sleep Drunkenness need to be extra careful when they first wake up and should not get behind the wheel until they are sure they are fully awake. In addition, patients should not be left alone because they can easily put themselves in danger.

Patients with Hypersomnia do qualify for a Service Animal under the Disabilities Act. Patients with Hypersomnia can choose to have either a Psychiatric Service Animal (PSA) or Emotional Support Animal (ESA).

A Psychiatric Service Animal is individually trained either by a licensed service animal training group or by the disabled individual themselves. Their training can include attempting to wake up the patient suffering from Hypersomnia, informing others that there is someone within a residence, notify the patient or others that there is a danger (burglar, fire, flood, tornado, etc.) and act as a “deterrent” when the patient cannot be aroused.

Emotional Support Animals are pets that are owned by a disabled person. They are not Service Animals and are not "individually trained to do work or perform tasks" that assist you with your disability.

These animals are there to provide comfort and security for patients suffering from Hypersomnia. Sense, Hypersomnics are both prone to Sleep Drunkenness and difficulty in being aroused, these animals can save a Hypersomnics’ life.

Here is a great example from my life. One day, while living with friends, I arose from bed with my service animal following right behind me. I was in the middle of a Sleep Drunkenness episode. I walked to the restroom and then headed for the kitchen.

I went to the fridge and grabbed the new carton of eggs. I then picked up a pan and began cooking eggs. After cooking them, I sat down with my dog, and we enjoyed eggs together on the floor. I then, headed back to bed completely unaware that I had just eaten eggs with my dog.

The whole time my friends were trying to grab my attention but could not. I do not remember any of this and only found out shortly after I woke up completely, which was several hours later. I am sure my dog got more eggs than I did and was more than happy to help me eat them but that is not the point.

The point is I cooked, while I was asleep. I did turn off the stove and lucky for me there were people around watching me. If I had not, I might have easily started a fire and been unable to put it out or be aware that I started it in the first place.

Sleep Specialists know very little about many types of Hypersomnia. When a specialist is presented with a patient who they cannot diagnose with an identified Hypersomnia or the patient does not fit that diagnoses completely, many doctors will diagnose that patient with Healthy Hypersomnia.

Healthy Hypersomnia is a general diagnoses used with Long Sleepers. It means the physician is unable to make a complete diagnosis at this time and more information or research is needed to determine the patient’s exact sleeping disorder but they can determine that it is some type of Hypersomnia.

A patient that is referred to as a Long Sleeper is described as a person with an usual sleep patterns or behaviors. Hypersomnics fall into Dyssomnias group of Long Sleepers. Dyssomnias is a broad classification of primary disorders that include both Hypersomnia (excessive sleep) and Insomnia (inability to fall asleep or stay asleep); they are categorized by a disturbance in the amount, quality, or timing of sleep.

The specialist view this type of Hypersomnia as being possibly “Healthy” for the patient sense the patient has no other medical issues that could be the “Primary” cause of the overall Hypersomnia and its symptoms. However, this general diagnosis is actually misleading by its own name.

It maybe how your body was designed to run but overall it is not actually “Healthy”. Hypersomnia may be natural to your body. However, it can severely interfere with a patient’s life. Patients with Hypersomnia should get in, as many extra hours of sleep; their bodies will allow and should schedule as much sleep in as possible, including naps.

So how is Hypersomnia bad for you?

Well the simple answer is that because patients with Hypersomnia require extensive amounts of sleep, which can exceed 12 hours a day. When a patient sleeps at least half the day or longer, their lives become affected dramatically.

Some of the things Hypersomnia effects are family relationships, finances, friendships, sexual relationships, work history, etc. These are just a few and all of them add up to many patients with Hypersomnia feeling alone, isolated from their peers, and loved ones.

The hardest thing for anyone with Hypersomnia to understand and get past is that they may not have control over their complete sleeping requirements but they are still important. Often patients with Hypersomnia feel that even their loved ones do not understand them and therefore, only find comfort from others with similar sleep issues.

In today’s world, one would think that there would be a lot of support for patients suffering from Hypersomnia but in truth there are only a select resources and many of them are in major cities. It is important to try to find a support group as well as to attempt to educate your loved ones on Hypersomnia, even if they do not seem to understand it.

I for one have this issue. My family still thinks it is possible for me to control my sleep. I often sleep through countless alarm clocks and find even when people attempt to wake me up that my Sleep Drunkenness is so believable that I am able to drift back to sleep easily without remembering I was even awake.

My primary sleep disorder has cause major issues in my life, including financial instability and isolation from my peers. I often hear things like “Didn’t you set your alarm?” or “I don’t understand, why you didn’t get up, if you set your alarm.” or “I woke you up, why didn’t you stay up?” or even, “You’re just so lazy, you’ll never get anywhere in life, if you continue to be so lazy.”

All of these just wear down a person’s self-esteem especially for those very bright individuals who at one time may been able to go to any university including Harvard or Yale. I was one of these individuals! Maybe not a straight “A” student but I had a lot of potential.

It seems like this world cannot comprehend that someone who sets an alarm cannot always wake up to it. It also seems that this world is so rigid that no matter how much someone who does not fit into that status quo tries; they will never make it.

I find it funny that even our government is so naive to think that we all can just hop out there and find a job that will fit into our sleep issues. Many patients with Hypersomnia try to get Social Security because of the demands their body has on them for sleep.

Most patients with Hypersomnia especially those with Idiopathic Hypersomnia find that holding down a job is extremely difficult, not because they cannot work the job but because showing up on time and being there every day is almost impossible. Even with all of the laws for people with disabilities, there are many of us left out.

Often, patients suffering from Hypersomnia suffer for life. Meaning Hypersomnia is a lifelong sleep disorder that does not go away. However, some patients may find that their required amounts of sleep may drop with age, while others are still sleeping.

The problem with the American Disability Act is that it does not cover patients suffering from Hypersomnia. Employers can fire an employee because they do not show up to work on time or do not show up at all. The employee suffering from Hypersomnia can show proof of their disability to an employer. However, an employer can deem that their employee’s disability cannot be accommodated for because it will interfere with the company business.

That’s right! A company can say that accommodating someone with Hypersomnia will interfere with business. This means that a company can fire an employee for a medical reason that prevents the employee from being able to get up and stay up like everyone else can.

I find this ridiculous. I understand that it is hard to prove to your employer that you are not slacking off from work but still there is a fine line between morally correct and stupidity.

Because employers can so easily fire someone with Hypersomnia, many patients find that supporting their basic needs is almost impossible. Some patients find that freelance work is an easier form of work because they can find jobs that will work with their disability without disclosing it to others.

Since, patients with Hypersomnia have difficulty maintaining employment, their finances and work history can be greatly affected. Poor work history can lead to difficulty in finding further employment. In addition, the stress of losing a job can make waking up to look for a job, extremely demanding on a person suffering from Hypersomnia.

Patients suffering from Hypersomnia need to worry about their stress levels because as their stress increase, so do their symptoms. Employment, financial, and relationships can all add stress. This stress can lead to countless hours of sleep.

Another issue many Hypersomnia patients encounter is in their relationships. There are different types of relationships ranging from co-workers, family, friends, and significant others; all of these are affected by Hypersomnia.

So, how are each of these affected by Hypersomnia?

Well, there are many reasons for each type of relationship. For co-workers, it could be that they do not understand why they are not receiving similar special treatment. Many co-workers see a patient with Hypersomnia as receiving special treatment from an employer because that patient is not being fired for arriving to work on time or missing work.

While family may not understand why one (or more) of their relatives is not achieving anything in life and cannot show up to family gatherings on time. Family members may become exhausted with countless attempts to help out a relative suffering from Hypersomnia such as with money for rent or attempting to wake them for an activity.

Although, many patients with Hypersomnia often create their own families with their friends; they often have trouble keeping friendships long term because of their sleep disability. Patients may find that their friends seem to be the only ones that understand. However, some friends do not and showing up to a promised activity or going out with their friends can make a patient feel isolated from their friends as well as the world.

Patients with Hypersomnia often find that their relationships with significant others are affected. Despite how much someone loves you; Hypersomnia can affect a relationship with any one in your life. Patients with Hypersomnia find that those closes to them are affected more than any other relationships; this includes both family and later their significant others.

In spite of how much love maybe there, Hypersomnia can be just as much of a burden on a relationship as money issues. Significant others can find Hypersomnia frustrating for many reasons, which include not having enough quality time with their partner or the constant demands put on them because of their partner’s disability.

There is so much more that Hypersomnia can affect in a patient’s life that it would take years to write it all down but the above is an attempt to help both other patient’s suffering from Hypersomnia, their family, friends, and loved ones understand this sleep disorder.

I do not claim to know everything about the above disorders but I do have a lot of knowledge about them because I do suffer from Hypersomnia as well as other medical issues. I also, have worked over 13 years in the medical field, where I gained a lot of knowledge of medical terminology, and how to make this terminology easier to understand. I hope that I made the above terminology easy enough to understand.

Another goal in writing this is to help my own family and friends to understand where I am coming from. In addition, my identical twin sister, Stephanie, also suffers from this sleep disorder. I am hoping that maybe now our loved ones can understand where we (my twin and I) are coming from but the sad truth is they may never understand and we may always be the family outcast.

If you have any questions, comments, etc. please feel free to ask me. I will be more than happy to try to attempt to answer any and all questions to the best of my knowledge. Thank you for taking the time to read this.

2 comments:

Very informative. I am in the Army and face medical discharge due to Migraines,Ideopathic Hypersomnia and Vasovagal Syncope. In addition, I have lost feeling to the nerve on my left thigh and my back hurts due to bones bulging on each other. I say all this to ask about Disautonomy condition. I am afraid I have been misdiagnosed and I would like to know this prior to leaving the army so that I can get the right treatment. Thank you for recommendations.

I really appreciate your blog. I thought I was alone with this condition. Before getting treatment I was so depressed because my family didn't understand that it wasn't that I didn't want to get out of bed it was that I couldn't. Some days I even felt that I didn't want to live anymore because I had to force myself to do daily things as a full time mother with a full time job. My husband didn't understand that I wasn't being lazy I just never felt rested. After being diagnosed I was put on several medicines including nuvagil which I found I was allergic to. The last medicine my doctor tried me on was Adderall which works ok as long as I take a booster Adderall in the morning along with an extended release and a booster in the evening in order to drive home from work. Recently I found out I'm pregnant and my hold world seems to be crashing. I can't get up to go to work. I've falling asleep driving and I have a hard time taking care of my kids. I don't know what to do at this point. If I can't go to work I know I will eventually lose my job, which I'm the main bread winner in my home. I've also had to withdraw from school because I couldn't hack it. I was just to tired to do the school work. I really feel at a lost and I don't know what to do. I've held my job for over 4 years and have been really successful as a loan administration manager and without the medicine all of my hard work and effort is going down the drawn. What should I do...I need help before it' too late.

About Me

Hello. My name is Christine but I prefer to go by Chris or
Jalopy. Please do not call me Christine or Chrissi unless you are family
or privileged. It does bother me a lot as Christine, usually means I'm
being yelled at and Chrissi, is someone I've known since childhood, knows
way too much about me, and I should be very worried that I am going to get
myself into a hell of a lot of trouble because I am unable to hide from them.
Now, with that said... Let me truly introduce myself. :)

I am a
writer or at least I try to be with my dyslexia and learning disabilities in
language arts, it can be hard at times. In addition, I also, have Idiopathic
Hypersomnia so I sleep more than the average person or perhaps the average
person, just is not sleeping enough, either way, it limits my time to write
because I have to try to live my life too. Therefore, what am I doing the rest
of the time?

I am currently working on my B.S. in Environmental Science focusing in Wildlife
Management. I am also, working full time so school has been on the back burner
for some time. I do not always get to put as much time into school because of
my past work schedules and my sleep disorder so I have been attempting my B.S.
for some time now. However, I hope to find an internship soon where I can work
in my field and am able to focus on school too.

Despite my sleep disorder, I have not given up on life. I have lost some of my
dreams and others are on hold. However, that does not stop me from being
passionate about things in my life or spending my life learning and this
bookworm does spend her free-time learning about things that interest her. So
what are some of my passions? Well, I have many passions. Here are a few of my
passions: 1) music and the arts, 2) equality, respect, and caring of all of Earth's creatures and
the integrity of our planet in which we inhabit, and 3) studying health and
medicine especially rare diseases, genetics, twins studies, and sleep
disorders, mainly Idiopathic Hypersomnia.My Heart Is Just As Fragile As A Leaf ~ Jalopy